It's Time To Tell You

In the wake of Robert F. Kennedy, Jr.'s recent commentaries on autism, I've felt something stir in me that has been dormant for a long time. I've been quiet long enough, I have kept my head down and plowed through personal trials for years, focused only on putting out the next fire and the next, without a lot of thought about anything else. Today with autism and education featuring so heavily in the news, I feel like it's time for me to look up, to open my mouth, pick up my pen, and speak.

I think for some families, autism is closer to how the media has portrayed it in shows like The Good Doctor, starring Freddie Highmore. Or for some it's a quirky syndrome with lots of humor, eccentricity, and creativity. I should pause here and tell you that I'm a special education teacher at the high school level. I teach grades 9-12 in a life skills classroom. I have taught many students with autism spectrum disorder. I am also a mother who has a 21 year old son with severe autism. I write this for all of these children: the one who belongs to me biologically and the ones who come to me in the classroom. It's time to tell you. Autism isn't always pretty. It's not always fun. It's hard.

This isn't a political article intended to sway the reader for or against recent proposals by those in the federal government. It's not intended to spark anger, hatred, criticism, or malice. Many people with autism do lead very productive lives and to propose that they need to be "cured" is very insulting to people in that community. People with autism who are self-aware, who have jobs, families, hobbies, and children (and there are many people like this), don't need a federal agenda to help them overcome this disorder. They don't need to be saved. They're fine.

For the rest of us, autism is not any of these things. It's a difficult path. Without the appropriate care and services, it becomes even more challenging . It's a misunderstood, sometimes maligned disorder. It's exhausting. It is not always quirky love and savant syndrome.

For a long time I played a role: I was the cool, informed mom, the brave parent who read the latest research, who kept it all together and did it with a smile and then bathed in the admiration of people who shook their heads at me and said "Wow, you're a great mom, I don't know how you do it."

The truth is, I really don't know how I did it either. I don't know why I don't have a drinking problem, or a drug addiction; I don't know how I finished school, I don't know how I survived. All I can tell you is, I just did, because I had to.

My son is 21 now. I look back at what we have been through and thinking about all of it exhausts me. The visits to doctors and specialists. ABA therapy. Co-occurring disorders. Two separate two day evaluations, four years apart. 11 psychiatric hospitalizations in pediatric units, one of which was in a state facility. Medications. Medications that kept him up all night pacing and muttering. Medications that did nothing. Medications that did too much. Elopement. Fear. Broken windows. Injuries, self -harm, sleepless nights, loss of income, threats, physical aggression, food dumped on the floor, clothes thrown over a back fence, inappropriate behavior, inappropriate language, screaming, crying, group homes, public schools that did nothing, public schools that did things they shouldn't, public schools that had teachers who gave up, public school who had teachers who were all in, hugs, kisses, laughter, I love you mommy...My. God. My god it takes my breath away, thinking of it all.

I credit my son with who I am today. I went through a bachelor's program in psychology and completed a master's degree in curriculum and instruction and still. Still! He is the one who actually taught me what I needed to know. I often tell people that he was and still is my greatest teacher, that only because of him can I do what I do now. I don't ever want to go back to who I was before him. But I would be doing him a disservice if I pretended it was all roses. It wasn't. It was heartbreaking and it was hard, for him and for us.

There has been much talk of a cure for autism. To me this sounds like a broken record, a ridiculous echo from the early 2000's that is rebounding back to us through the years, a zombie speaking in stilted gibberish, refusing to either evolve or die. To me when a politician takes the stand and starts blabbing about finding cures, it's its own form of scripting: repetitious language that they heard somewhere and repeat because they think it sounds good. Show me your research. Show me your solid understanding and personal experience with this disorder, your plan for how you're actually going to improve their quality of life and the lives of their family members, then we can talk.

Am I for a cure? Not in the sense that the word suggests. I am for more research, better services for families, better services for adults who receive late but life-changing diagnoses, an overhaul of the entire special education system in the public sector, greater insurance coverage for this disorder, which is so prevalent, but really has always existed, masquerading under different names. I am for a loss of stigma and greater awareness and inclusiveness, a recognition that not all forms of autism require a cure, and that some forms desperately need it.

Today a colleague came by to say hello and marveled at my patience in a classroom full of music and laughter and noise erupting all around me, as it always does. I showed him a picture of my son. "It's because of him," I said. It's always because of him.